Since my first day on the clinical study was a long one, so shall be this post:
· Arrive at hospital 10 am (very civilized)
· Go to blood lab and have seven vials of blood extracted. Lab technician sings He Ain’t Heavy He’s my Brother (“The road is looooong….”) I think this is perfect. Have been humming it all day.
· Go up to top floor of hospital and am welcomed, weighed & moved into my room: window view East, wireless connection from my bed, very nice accommodations, service excellent. (Americans have no idea what they’re missing.)
· Clinical trial nurse (her name is Naz) goes over some questions with me, I answer hers, she answers mine. She is not rushing me, she explains everything.
· Oncologist (her name is Dr. Elser) comes to give me a physical exam & ask/answer more questions. Again, everything is explained, nothing is rushed. I like these women.
· I go for a chest x-ray because I have a little cough (this clinical study stuff is a hypochondriac’s dream!)
· Naz hooks up my ECG leads and proceeds to do 4 or 5 ECGs, about 10 minutes apart. All are normal. This is our baseline.
· I eat some hospital food (the low point of my day)
· Naz sets up an IV in my arm for the administration of flushes & drugs (Panobinostat, followed by Herceptin.)
· We are GO for drugs.
· Naz accesses my port to take blood samples. There are seven (or eight?) vials to be filled with my blood today. This is after the seven vials taken this morning. (No wonder I dreamt of vampires last night. Specifically, of a really glamourous, wealthy vampire couple in their fifties, kind of like that couple in the old TV show Hart to Hart, except slightly less goofy and with much darker pastimes.)
· Friends Michelle and Angelique arrive bearing my favourite chips, trashy magazines, candy, novels by my favourite writer, little French cakes, Thai food, tidbits of gossip and lots of really good energy (the high point of my day)
· Friend Carol (who recently completed participation in a clinical study herself) drops by to visit, bringing yet more gloriously trashy magazines!
· Naz pops in periodically throughout this little salon of visitors to switch IV bags and make sure I’m feeling ok. (I am laughing my head off and eating treats, clearly feeling ok. Maybe she wants to make sure I’m not overdoing it. Or that I don’t secretly want these people to leave. I feel that Naz would make it happen if I gave her the signal: people would be briskly and professionally ushered out the door and into the elevator before they knew what was happening. I am growing very attached to Naz.)
· My IV is finished.
· As my friends take their leave I start to feel dizzy. Crashing from candy-and-cake-induced sugar high? Abject sorrow at their departure? No: side effect of study drug.
· Naz is all over my blood pressure, repeatedly checking it, notifying my oncologist, and hooking me back up to the IV with a bag of saline.
· Dizziness abates, blood pressure normalizes.
· Blood tests & ECGs resume, and will continue hourly until 10:20 pm.
· I blog.
· Uh oh blood pressure down again. More IV fluids. I am SO HYDRATED!
· I blog.
· Blood pressure levels out.
· My husband is coming soon, bringing a supper prepared by our dear friends who have a fantastic gourmet food shop and catering business. These are good people to know at any time, but given that powdered mash potatoes and suspicious-looking meatloaf just landed on my table, I’m especially grateful to them right now.
After supper I want my husband to climb into this bed beside me and read for a while. Even though we frequently battle over the far more expansive real estate of our bed at home, there’s something nice about someone being squished up beside you in a hospital bed. As long as it’s someone you love. Not just a random orderly. Or, god forbid, another patient.
Dashing husband has arrived, bearing outrageously delicous-smelling food! Double hooray!!